Category Archives: cancer psychological impact

“I care for myself. The more solitary, the more friendless, the more unsustained I am, the more I will respect myself.”

— Charlotte Brontë, Jane Eyre

One thing that’s become evident to me as a cancer survivor is that we all respond to cancer differently. Our response depends primarily on our own personality and past life experiences. How we deal with a life-threatening illness will differ according to our personal values and may also be connected to how we have responded to crises in the past. It’s also important to note that we each have our own toolbox of resiliency to work with. Cancer is extremely personal, so our response tends to be personal too. This has definitely been my experience as an ovarian cancer survivor. I’ve learned a great deal about who I truly am as a result of my emotional and psychological reactions to having gynecological cancer. It’s been a gradual process during the course of which I’ve become more nurturing and accepting of myself.

Posing with my mom and brother Ray at the annual Ovarian Cancer Canada Walk of Hope. The nationwide event is held each September.

The moment I was diagnosed with cancer I entered a psychological realm where wanting to know everything about the disease alternated with fear and aversion. I realized it was solemn news when a week after my hysterectomy the phone range and my surgeon wanted to see me immediately. As I sat in my gynecologist’s office on that autumn afternoon, he was thoughtful enough to provide me with my own copy of the surgical pathology report, a crucial document outlining the specifics of my uterine and ovarian cancer. He estimated that it would be a couple of weeks before I could have a consultation with a team of oncologists at the Tom Baker Cancer Centre. In the coming days I developed a love-hate relationship with the information that I had been given. Numb and in shock, I read over the three-page report repeatedly, meticulously researching the strange and frightening medical terminology.

Simply explained, every cell in the body has a tightly regulated system that dictates when it needs to grow, mature and eventually die off. Cancer occurs when cells lose this control and divide and proliferate indiscriminately. Theories, treatments and possible explanations for cancer are abundant. They range from the factual or medically proven to the bizarre, absurd and downright dangerous. Regrettably there are a few contemptible individuals who knowingly try to profit from cancer patients or exploit our physical, emotional, and psychological needs. When I access printed materials or the abundance of online resources that are available, I remain highly selective. When I started treatment I immediately came to appreciate that the most specific and reliable information was coming from my oncologist and the incredibly skilled medical professionals on my cancer care team.

Above all, as time has passed I’ve come to trust myself, I feel like the foremost expert on my body and the disease that’s invaded it, Decisions concerning my treatment have always been made in conjunction with my oncology team, however most final verdicts rest with me. For example, in the fall of 2012 I made the excruciatingly difficult decision to forego treatment with radiation, opting for observation instead. The risks of pelvic radiation include the possibility of rectal bleeding; even worse, some patients will experience a bowel blockage or a permanent change in bowel or bladder habits after their treatments are finished.

For most cancer patients the benefits of undergoing radiation outweigh these serious risks. But due to my personal medical history it’s almost certain that it would have posed a substantial danger. The radiation oncologist informed me that due to my previous bowel blockage during chemotherapy the possibility of severe complications occurring would be much higher than average. Besides, I was undeniably exhausted from three consecutive abdominal surgeries in addition to five cycles of carboplatin, at the time I felt I could endure little more.

Finally, no one has the right to tell you how to respond emotionally to your cancer or to lecture you about how you should live your life after a diagnosis. Early in my cancer journey I was confronted by a couple of individuals who felt that I should not allow cancer to change my life. How could I have not changed? I’m not going back to the way I was before I had cancer. I see that as a waste of all that I have been through. As a cancer patient I’ve searched for kindness and compassion from my family, friends and health professionals because that’s what I’ve always done when I’m faced with life’s most difficult situations. I believe that I should be able to express my emotions without being judged by others, so naturally this was my philosophy when I got cancer. I sometimes struggle with fitting in and belonging, so I’ve become involved with supportive organizations such as Ovarian Cancer Canada and Wellspring.

sur•vi•vor (sərˈvīvər/) noun — A person who is able to live their life despite experiencing difficulties.

It’s been over six years since my cancer diagnosis and there are still times when I ask myself soul searching questions about my disease. A lot of the issues I’ve been thinking about lately concern the terms that we use when we talk about cancer, take survivor and survivorship for example. Although these expressions seem to be embedded in the cancer lexicon, there is still confusion regarding their meaning. For instance, when exactly did I become a cancer survivor? Who is considered to be a survivor? What criteria can or should be used to determine if someone is in this category?

“Cancer survivorship begins at diagnosis and covers the physical, psychosocial, and economic issues of cancer, from diagnosis until the end of life.” As a woman who has fought gynaecological cancer, I’ve come to accept this commonly used description of cancer survivorship, I accept the all-encompassing notion that’s presented in this definition because cancer does impact every single aspect of a person’s life. In retrospect, I also believe that my survivorship began that moment in my gynecologist’s office when he told me the devastating details of my pathology report. Simply being diagnosed with cancer made me a survivor, from this perspective I didn’t have to wait until after I had completed almost a year of treatment. Before the surgeons at the Tom Baker Cancer Centre cut into my body and before the first drop of chemotherapy solution ran ominously into my veins I was already a survivor in the eyes of the cancer community.

As the well-known gynecologic oncologist Dr. Rick Bouley explains, the commonly accepted definition of “survivor” within the cancer community is simply a person diagnosed with cancer. So once the terrifying sentence, “I’m so sorry, the biopsy shows that you have cancer,” leaves your doctor’s lips and pierces your soul, you begin life anew as a cancer survivor. I remember my first chemotherapy treatment and how insecure I was, part of me felt like I was less of a “survivor” than some of the other cancer patients who had been fighting the disease for years. I can laugh at the situation now, but I was rather worried that some of the veteran chemotherapy patients might be able to tell that I was a newbie. They would ascertain that I looked too healthy and had all of my hair! When I arrived for my first session, I noticed that the people around me seemed to have many types and stages of cancer—what is more, a good number of them exhibited full heads of hair.

Finally, the notion that some people seem to have, that disease outcome (whether you live or die) determines if you are a survivor is erroneous. I’m still inspired by the words of the late American sportscaster Stuart Scott. “When you die, it does not mean that you lose to cancer,” he said. “You beat cancer by how you live, why you live, and in the manner in which you live,” There’s a controversial, yet commonly held, view that a cancer diagnosis is a war or a battle that must be won. The problem with this philosophy is that it places the burden almost entirely on us patients. If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we weren’t strong enough to will it away.

In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. Ultimately, they are no less survivors than those of us who are lucky enough to be “cured” or to enjoy decades of remission.

I’ve been thinking a lot lately about the controversial, yet commonly held, notion that a cancer diagnosis is a war or a battle that must be won. Doesn’t this philosophy place the burden almost entirely on us patients? If we die or if our cancer ultimately recurs it’s because we didn’t think positively enough or we weren’t strong enough to will it away. I know of plenty of women who’ve succumbed to ovarian cancer and they were among the bravest and most resolute people on Earth. In my opinion, a person’s cancer outcome will depend almost exclusively on medical science. Of course, there are always certain unknown factors or variables—what we sometimes refer to as chance. I’ve learned to face the reality that much of what occurs in terms of my cancer is beyond my individual control, no matter how strong or determined I try to be.

When I was first diagnosed, an iconic image associated with cancer kept going through my mind. I closed my eyes and I could see one of Canada’s most legendary and revered figures, Marathon of Hope runner Terry Fox. I can vividly remember Fox from the photographs and TV clips of my early adolescent years. He continues to represent a certain type of heroism to me, and his legacy offers proof that one person can change the world in the face of tremendous adversity. Nevertheless, it was beyond the young Fox’s control, that his cancer returned and he was forced to stop his Marathon of Hope. In the end, he received multiple chemotherapy treatments and even experimental interferon treatments; in spite of everything, the disease continued to spread. Terry Fox died on June 28, 1981, with his family by his side. My point is that even the heroes among us don’t have it within their power to simply will cancer away.

Well-known screenwriter and producer Josh Friedman was recently diagnosed with kidney cancer, he writes eloquently about the warrior mentality in a personal essay he authored for Time magazine. “Cancer doesn’t give a damn how tough you are,” he argues. “Cancer doesn’t care if you stared down the North Koreans like John McCain, or won the Tour De France like Lance Armstrong.”

Friedman is adamant that patients shouldn’t feel a burden to be brave or to be victorious in some kind of ongoing battle with their disease. “You don’t battle cancer. You don’t fight it. If cancer wants you it sneaks into your room at night and just takes you. It doesn’t care if you’re John Wayne or John McCain.”

“The tough guy narrative is seductive,” Friedman reminds his readers. “It suggests we have control over our fate, that we can will cancer away. These are lies we tell ourselves. And for some patients that’s helpful. It gets them through the day. For them, it’s a useful tool. But courageousness is a standard that no sick person should feel like they have to meet.”

One popular theory that makes me especially angry is one that links specific personality types to an increased risk of getting cancer. “The Type C Connection: The Behavioral Links to Cancer and Your Health,” argues that the personality traits of some people make them more prone to cancer. Typically, “Type C” individuals are the antithesis of warriors: They are unassertive people-pleasers who repress their emotions.

Modern researchers have largely debunked the idea that negative emotions heighten an individual’s susceptibility to developing cancer, or that maintaining a positive outlook can stave off cancer’s return or delay its progression. I agree with the majority of oncologists and cancer researchers who argue that there is no evidence to support the idea that personality can influence the growth of malignant cells. There is no cancer for which attitude can halt the progression of disease. A handful of studies have found that women who are anxious or depressed are more likely to suffer recurrences of breast cancer and die from the condition. However, it’s obviously true, and understandable, that dying women are more likely to be anxious and depressed.

A recent article in the Washington Post bore the straightforward headline: “It doesn’t take a warrior to beat cancer. It takes a treatment that works.” The author, Steven Petrow, discusses his opinion that people shouldn’t think that their cancer outcome is primarily in their hands. If someone’s cancer progresses, it’s a failure of the medical treatments that are currently available, plain and simple.

I’ve been living with cancer for six years now, having been through three abdominal cancer surgeries, five rounds of chemotherapy as well as countless scans and procedures, I’ve become deeply aware of the “etiquette of cancer.” Or the lack thereof. Etiquette has everything to do with situation, context, timing, individuals and circumstances—cancer etiquette is the same. I can’t offer any concrete rules, only suggestions and advice about how to communicate when the subject you’re dealing with is cancer. Perhaps most importantly you should be authentic and true to your relationship. Essentially the person hasn’t changed and wants to be treated as you always have. He or she is still that special someone in your life, with cancer, for the time being.

Respect the Person With Cancer’s Privacy

One important area of etiquette that was sometimes breached during my diagnosis and treatment was respect for my privacy as a cancer patient. Of course, I won’t name people specifically, but there were one or two family acquaintances who took it upon themselves to spread the news of my illness. Please don’t share cancer information unless you know you have permission from the individual. Don’t use telephone calls, emails, social media, newsletters or bulletins to comment about a person without their specific consent. This rule is especially important when it comes to something as intensely personal as one’s health or a cancer diagnosis.

Practice the “Ring Theory” of Kvetching

Recently a technique has gained attention for coping with a major life crisis, such as a serious illness. It’s called the ring theory of kvetching, so named by the psychologist Susan Silk, writing in the LA Times in 2013. Silk drew on her experiences as a breast cancer patient. When she declined one colleague’s visit, pleading exhaustion, she was told, “This isn’t just about you.” “It’s not?” she wondered. “My breast cancer is not about me? It’s about you?” The main principle of the ring theory is that support, caring, comfort FLOWS IN. Kvetching, venting, complaining, requests for empathy, all of this only FLOWS OUT. The person or people with the illness, trauma, or other enormously challenging life situation — they get to complain outwardly to their first circle of support. The first circle of support does NOT vent — about the challenges, the loss of sleep, the emotional toll, etc. — to the person or people at the centre of the trauma.

Don’t Offer Treatment Advice

When I was undergoing treatment, I can remember getting angry when people other than my cancer care team would try to give me medical information. “If I want information regarding cancer or cancer treatment, I’ll ask for it,” I thought. In the months following my cancer diagnosis I was inundated with information and advice from my medical team. Consequently, the articles from newspapers, magazines or online publications that I received from other people were annoying. For the most part these pieces were irrelevant and unnecessary. Also be careful when presenting teas, potions or homeopathic remedies to treat cancer. When some individuals gave me a gift basket with ginger and dandelion root, I didn’t bother to explain to them that these nutrients are specifically mentioned on a list oncologists give to their patients. Ginger and dandelion root do not combine well with many traditional chemotherapy drugs, and therefore patients should refrain from using them during active treatment.

Don’t Minimize the Diagnosis

Don’t declare, “Oh, cancer’s no big deal. My mom has had that for 20 years and is doing fine.” Remember that I’m not your mom and that any cancer is a serious issue. Even skin cancer, bladder cancer and other “minor” malignancies kill people every day. They cause suffering. They cause organ removal and disfigurement and fear and shame. I hate when people try to deny this fact or to minimize it by giving me false reassurance or by saying that I’m going to fine. The truth is I don’t know I’m going to be fine, you don’t know I’m going to be fine, even my oncologist doesn’t know what my outcome will be. Instead, I feel comforted by phrases like “I believe in you.” or “I’m pulling for you.”

Don’t be Judgmental or Ask for a Health History

For many cancer patients there’s nothing worse than being sick and getting advice from the healthy, because it’s almost like insinuating we did something to make this happen to us. It may be true in some cases that our lifestyle or health care choices increase the odds of getting cancer or contribute to cancer progression. However, if you cause someone with cancer to absorb blame and feel shame it will almost certainly make matters worse. Shame and guilt are unnecessary burdens to carry. From everything that’s known about the emotions and health, acceptance and forgiveness are what cancer patients need to cultivate and enhance healing, not self-condemnation or self-blame.

I’m convinced that nothing can fully prepare a person for the impact of a cancer diagnosis, but there are still things that I wish I had done before cancer became a part of my life. As a five-year cancer survivor I now have the wisdom of hindsight, so I’ve chosen to share my definitive list of what I wish I had accomplished when I was still healthy.

Have a Plan Regarding My Work and Income

It’s important to have a strategy in the event that you suddenly become unable to work due to illness or disability. Unfortunately I was unprepared and learned this lesson the hard way. If you’re a self-employed individual, such as a freelancer or independent contractor, you may be especially vulnerable if circumstances ever render you unable to work for the long-term.

Go Out and Experience New Things

When I was still in good health, I made too many excuses about why I couldn’t go out to events or experience new things. I’m basically an introvert and prefer to stay in, it’s for couples only, I can’t afford it, the transportation and commute are too much of a hassle were some of the issues I’d focus on when ruling out gatherings or events.

Be More Physically Active

I regret not going for long walks or spending more time outdoors in the years leading up to my cancer diagnosis. Science has essentially proven that people who are active have an advantage compared to those who don’t exercise. Active individuals tend to live longer, healthier lives than their sedentary counterparts.

Purchase a Disability Insurance Plan

This is something I really regret not taking care of and I strongly urge anyone without this type of insurance to look into a plan. The only alternative to private insurance if you suddenly become chronically ill or disabled is most often government assistance.

Listen to My Body

Ovarian cancer is sometimes called the “silent killer” because its symptoms are often subtle or mimic other less serious illnesses. It’s important to know what is normal for your body and to be alert to any changes that might indicate a problem. I wish I had been more in tune with my body and more persistent with my doctors.

Develop a Support Network

When I was diagnosed with cancer I quickly realized that my social support network is very small. Specifically, I’m single, come from a small family of origin and have few close friends. I understand that some of this isn’t under my control, but I definitely wish I had been more diligent about building a network when I was still healthy.

Pay More Attention to My Relationships

If you have conflicts in your family relationships or have simply drifted apart, I suggest you reach out to repair whatever damage might have occurred over the years. Once you are diagnosed with a chronic illness you suddenly comprehend the value of having strong bonds with family members, including your parents, spouse, siblings and children.

Be Prepared For People’s Reactions

When people learned of my cancer diagnosis their reactions sometimes caused me resentment, frustration or anger. They meant well, but I could have been more prepared for their sometimes inappropriate remarks and gestures. Many individuals are misinformed about the scientific facts surrounding cancer or don’t know how to properly reach out to a friend who has been diagnosed with the disease.

Catch Up on Things I’d Let Slide

We all have a tendency to procrastinate or push tasks and projects to the back burner. When I became ill I suddenly realized how many things were left undone and how many loose ends I should have tied up. If you have been meaning to buy some essential new pieces for your wardrobe, need new glasses or need to get your car or computer serviced, do it now!

Establish an Outlet For Anger and Grief

The universal emotions for nearly all cancer patients are anger and grief—intense anger that can border on rage and a grief that can feel like a bottomless well of despair. To maintain your emotional health you’ll need an outlet for these feelings. It might be a friend, therapist or support group, but it’s important to have someone that you can confide in without fear of judgment

In just a few weeks I’ll face an emotional and bittersweet milestone, the fifth anniversary of my cancer diagnosis. Above all I’m grateful that I made it through the grueling medical treatments that I had in 2011 and 2012. There were moments when I felt so sick and physically weak from surgery or chemotherapy that I was afraid I might die. I thank God for my oncology team; they were always there and never stopped encouraging me. It turns out they were right to be optimistic about my prognosis, or at least to be confident that I could achieve remission. I’ve been in remission from ovarian cancer, a disease that many refer to as the silent killer of women, for four years now.

As my cancer anniversary approaches, I’ve been thinking a great deal about how much things have changed for me. Personally, I’ve discovered that physical attractiveness, material possessions and social status all matter less to me now. These things frequently seem to fade into irrelevance as I confront a life-threatening illness. Meanwhile, my relationships with other people, discovering ways that I can make a difference in the world and learning more about the essence of who I am are currently at the forefront of my agenda and have an extremely high priority to me. Most of all, I’m aware of time and of the immeasurable value of each day that I’m alive. Here are some powerful meditations that I though I would share.

“I ask you to imagine that there is a bank account that credits your account each morning with $86,400. It carries over no balance from day to day. Every evening the bank deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course.

Each of us has such a bank, its name is time. Every morning, it credits you 86,400 seconds. Every night it writes off at a loss, whatever of this you failed to invest to a good purpose. It carries over no balance. It allows no overdraft. Each day it opens a new account for you. Each night it burns the remains of the day. If you fail to use the day’s deposits, the loss is yours.

There is no drawing against “tomorrow.” You must live in the present on today’s deposits. Invest it so as to get from it the utmost in happiness and health. The clock is running. Make the most of today.”

— Marc Levy, French novelist

“It’s being here now that’s important. There’s no past and there’s no future. Time is a very misleading thing. All there is ever is the now. We can gain experience from the past, but we can’t relive it; and we can hope for the future, but we don’t know if there is one.”

― George Harrison

“You must live in the present, launch yourself on every wave, find your eternity in each moment. Fools stand on their island of opportunities and look toward another land. There is no other land; there is no other life but this.”

— Henry David Thoreau

In the film Dead Poets Society Robin Williams plays an unconventional English teacher named John Keating. In one of the movie’s most memorable scenes the teacher stands with his students gazing at some vintage school portraits. As they view the photographs of previous generations, this is what Keating tells the group of young men in his class:

“They’re not that different from you, are they? Same haircuts. Full of hormones, just like you. Invincible, just like you feel. The world is their oyster. They believe they’re destined for great things, just like many of you, their eyes are full of hope, just like you. Did they wait until it was too late to make from their lives even one iota of what they were capable? Because, you see gentlemen, these boys are now fertilizing daffodils. But if you listen real close, you can hear them whisper their legacy to you. Go on, lean in. Listen, you hear it? — Carpe — hear it? — Carpe, carpe diem, seize the day boys, make your lives extraordinary.”

I suppose I’m incredibly lucky, having never been admitted to a hospital as an overnight patient until a few years ago. Inevitably like many cancer survivors I’ve undergone an unhappy transformation, I’ve been transformed from a hospital newbie into an experienced pro. Now that I’ve completed active treatment for ovarian and uterine cancer, I can boast approximately 70 days of my life spent looking at the world from a hospital bed. It’s no wonder that I was almost brought to tears recently while reading an article by André Picard, the Globe and Mail’s public health reporter. Picard nailed it perfectly in a recent article Taking patient-centred health care from rhetoric to reality. Here is an excerpt:

“So, what do patients dislike about being in the health system – aside from being sick, of course? A number of things: the helplessness; the feeling of anonymity; the discontinuity of care; the rote and the repetition; being talked about and talked to, rather than talked with; the waiting; and the loneliness.”

This epitomizes my experience as a cancer patient in so many ways and it also hints at what I believe are the limitations of most Canadian hospitals.

What Hospitals Are Not

During my cancer surgeries I often felt an urgent need to leave the hospital and go home, I never felt relaxed or like I could take my time to heal. These days, it may be easier to define hospitals by what they are not. They are not places for the sick to get well, not unless healing takes place in the brief interval of time that makes the stay a compensated expense. My hospital treatment was primarily covered by Alberta’s universal health insurance, but I needed my personal Blue Cross insurance plan as well. Through it all I was aware that hospital beds in Alberta cost around $1000 per day and that those beds are in limited supply.

I watched as some short-term stay patients were relegated to the hallway due to the unavailability of rooms. It was a reminder of how drastically the situation for patients and their families has changed in the past couple of decades. Once hospitals were where you stayed when you were too sick to survive at home; now you go home anyway, cobbling together your own nursing services from friends, relatives and drop-in professionals.

The Foothills Hospital in Calgary is one of Canada’s largest medical facilities.

Turn Down the Noise

Like overcrowding the noise level in most hospitals has grown considerably worse over the past several decades. Dr. Brian Goldman recently discussed this topic in a blog post titled Hospitals bring down ‘da noise. Since 1960, the average daytime noise level in hospitals has gone up 200 per cent. Over the same period, the noise level at night has gone up 400 per cent. The World Health Organization says that for optimal health, the noise level in a patient’s room should be no higher than 35 decibels during the day, and 30 decibels at night. That’s the level of quiet conversation. In spite of these guidelines a 2012 study by researchers at The Ottawa Hospital found that the noise level on one unit averaged 76 decibels, that’s the noise level of a vacuum cleaner.

My personal experience gives an even more graphic example. At one point I had the misfortune of being hospitalized during some construction on the gynecologic oncology unit. Many staff members were apologetic and upset by the constant racket that we all had to endure. There were times when it sounded like a jackhammer and the noise levels had to be over 100 decibels. I believe that these circumstances were detrimental to my health and curtailed my ability to rest or heal properly. Actually, several studies have confirmed that excessive noise or disturbed sleep affects the immune system and delays recovery from major surgery.

Hello My Name Is

The medical professionals that I’ve encountered have all been competent, but what is often lacking is a sense that I’m a unique human being and not just a numbered chart or an illness to be discussed. British doctor Kate Granger recently passed away from cancer, but before she died she drew global attention to the impersonal care that patients in hospitals often receive. When Granger entered the hospital, her greatest anguish came from the fact that she was not treated as a person, but as an object on which tasks were performed. “I just couldn’t believe the impersonal nature of care, and how people seemed to be hiding behind their anonymity,” she recalled. Dr. Granger noted that, when people introduced themselves, it was comforting and made her feel safer and more like a person than an illness.

Dr. Kate Granger left an important legacy.

While facing her own terminal cancer, Granger launched a spontaneous “Hello my name is” campaign urging health professionals to introduce themselves to patients. More than 400,000 staffers with the National Health Service in England have embraced the philosophy, and there are offshoots in Australia, France, Germany, Italy, the United States and Canada. Meanwhile the campaign is still gaining momentum on social media, the hashtag #hellomynameis has been used more than one billion times.